A Blog For Those Getting Used To Life With A Stoma

Last Night I Wished My Ostomy Away

I wished my ileostomy bag wasn’t real yesterday. I wished it wasn’t there, I wished it would go away. I knocked it whilst pulling down my top and just broke down. I’m not sure if I was overtired or embarrassed by the current situation – I’d blocked the toilet with baby wipes after cleaning up (apparently you’re not supposed to flush babywipes) – and my boyfriend was annoyed about it. He told me I shouldn’t be flushing babywipes down the toilet, whilst I frantically got worked up and tried to explain that babywipes were the only thing I could use!

It was really late, like 3am, and I hid under my duvet in bits whilst he sorted the bathroom out. I felt so bad, but he’d taken control of the situation and I felt too embarrassed to stay in a room with him! I felt really upset. I thought I’d annoyed him and I felt like it was all my ileostomy’s fault. Writing it now, the situation sounds so silly. But last night it really got to me. I felt ashamed of myself, that I couldn’t even do a simple thing like use the toilet without causing a scene. Hiding in the darkness beneath the covers with my hands over my ears I just sobbed and sobbed. I just wanted to feel my tummy the way it used to be. I cried harder as my hand moved down my stomach as the bag rustled against my palm. I imagined my body a year ago. My stomach neat and scar free… bag free. And I just missed it. I missed seeing the whole of my tummy in the mirror. I missed not hearing any rustling as I moved about in bed. I missed being able to shower without being cautious and I missed not having these baby wipe situations.

Last night just bought back my whole experience in the hospital. The constant screaming for the nurses, being so high on pain relief I couldn’t even speak properly. Crying out in pain and being told I was a couple of hours from dying. I just couldn’t get it out of my head. I can’t describe the way these thoughts make me feel. I don’t think I’ve given myself time to deal that experience. I find it too hard to, it’s too emotionally draining going over and over it. But it’s something that creeps up when I’m feeling at my lowest, and I just can’t seem to shake away these memories. And that’s what makes it worse. They’re memories. They were real at one point. It’s not a bad dream that a cuddle can sort out. It’s not a bad thought you can shrug off. It was reality once upon a time. And for me, it’s somewhat haunting.

And I think I’ve come to realise that maybe I’ll never truly love my ostomy. The fact that a touch of my ileostomy or an embarrassing experience can bring back such torment at anyone time, scares me. I can accept it, and I can deal with it. And I can like it. I can appreciate the fact that it saved my life, and can deal with is visually. I can write about it publicly. I embrace it. But I’m just not sure I can love it, because it’s not something I’d ever have wished for, nor would I wish on anyone else.

I feel guilty for feeling so negatively towards my ostomy. I know it saved my life and that without it, I wouldn’t be here. But I also just feel so angry towards my IBD, Ulcerative Colitis. It nearly took so much away from me. My job, my relationship… my life. And I’m allowed to be angry at that, aren’t I? I’m angry at the people that didn’t listen to me, and could’ve saved me from surgery a long time ago.

I don’t want anyone to feel disheartened by this post. Nor question my motives. I’m merely just having a bad couple of days. And I would never disregard the fact that I think my ostomy is a beautiful, life saving thing. And I am so grateful that it has given me a second shot at life. And I’ve come to terms with that fact not everybody will accept the change in my body. I’ve accepted my body. And that’s okay. But sometimes, I can’t help but miss my old one. Maybe this is because I never appreciated it beforehand. This whole experience has made me reflect on all the time I spend pointing out the flaws I could see within myself. And now, as I look back on those moments, I regret them. I regret not realizing my body was fine the way it was. I hate the lengths I’d go to to feel better about my body. And I guess I hate that I’ll never get a chance to accept my body the way it was… because no matter what I choose to do in the future, it’s never going to be the same.

I feel nervous posting something like this on my blog. I don’t want you to think I’m contradicting myself, or being hypocritical. But this blog is my diary, my way of dealing. And it’s important for me to write every ounce of how I’m feeling, so that I can reflect on it and move on from it. And this is why I’m writing today, to move on from last night. To accept that I am going to have nights like that. Nobody can be completely happy all the time… can they?

I feel like this a lot at the moment Hattie. I’ve been trying to put it into words so much but just haven’t been able to and this has helped so much! I want to reblog it but don’t know how 😦
I’m always here if you need a talk. Never forget you’re beautiful x

Reblogged this on Ostomism Not Pessimism™ and commented:
I’ve been trying to get it into words how I feel quite a lot for a while now but just haven’t been able to. Thank you Hattie for this post – it means a lot and contains a lot of feelings and thoughts I can relate with. Love you pretty lady x

We’re all entitled to bad days Hattie, and you should not at all feel nervous or guilty about posting about this sort of thing. It would not be normal if we didn’t get annoyed and upset sometimes, or if we didn’t “reminisce” or miss how things used to be – a tummy without a bag, a restful nights sleep without rustles and a luxurious cautious free shower!

Whilst there is so much to be thankful for in having our stomas and what they have given us, they are not always easy to manage or live with on a daily basis, especially after a night where things maybe didn’t go as smoothly as you’d like.

Don’t beat up on yourself for feeling like this! I do exactly the same thing, but I know we have to take the not so positive with the positive some days. Sometimes it can be a love-hate relationship!

It is definitely important for you to express how you are feeling. Never second guess yourself or feel hypocritical about doing that. These are raw, honest truths, and can be just as meaningful to write about and reflect on as the positives. Thank you for sharing x

I feel same at times I cannot have reversal its not an option I wish I had a normal stoma as I had before had reversal went drastically wrong ended up with jejunostomy its one of the hardest stomas to control got no social life had to leave work I’m literally banging my head against a wall with it the bags ate awful and leak constantly I’m going to Manchester next month hope they can sort it make my life bit easier x

As someone who had an ileostomy at 15, and it was absolutely fine, hardly had any problems with it, I forced my Dr to reverse it because back then I hated it, and I’ve ended up with 7 years of abdominal fistulas that act like stomas and a new high output ileo five years ago alongside nightly IV feeds, I completely understand the not appreciating your former body feelings. I completely hate my 15 yr old self for being rash and putting myself into this much worse situation. At my lowest moments when I remember the countless number of hospital stays, surgeries and breakdowns, all I can do is cry and end up self destructing temporarily/not looking after myself properly.
We all deserve and need the bad days where all we can do is cry/sleep/binge netflix, so never feel guilty for the low moments.

Feel for you I have a fistula and a jejunostomy having surgery in 3 weeks to have fistula fixed and hopefully move jejunostomy and make into a iliostomy fistulas are awful its just taken me nearly 2 hours to change bag feel like banging my head on the wall sometimes .